Closed An international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with ME/CFS

From @PhysiosforME

Quote:

We are pleased to present "an international survey of experiences and attitudes towards Pacing using a heart rate monitor for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome."

People with ME often use heart rate monitors to pace their activities but there has been very little research exploring the use and peoples experiences of this approach.

The aim of this study is to explore the experiences of and attitudes towards pacing with a heart rate monitor in people with ME.


How can I take part?

The first step is to read the patient information sheet.

The link to the survey can be found on the information sheet.

Download Patient Information Sheet Here

You can find out more about using a heart rate monitor on our website here.

https://www.physiosforme.com/hrmonitorsurvey

 

The survey has 40 questions, virtually all with tick boxes / radio buttons to make the questions easier to answer.

There are some free text boxes if you want to add in some extra information about your experience of HRM.

There are some demographic questions, questions about the type of device that you use, the benefits and difficulties of HRM, the effect of HRM on symptom severity, a few questions about HRV, whether you feel you have been harmed by HRM, attitudes of those around you to HRM etc

There is an email address at the end to contact the researcher if you are happy to be interviewed about your experience of HRM.

 

Done.

 

@PhysiosforME - I'm confused! The intro says, 'The University of Leicester (UK) would like to survey the experiences of people with ME/CFS who are Pacing using a Heart Monitor.' So is this only for people who are currently using a monitor? I've used one many years ago but don't know if I should complete the survey.

 

I was involved in creating this survey. Thanks for your interest.

I'd say complete the survey if you can. Part of the aim of the survey is to explore barriers to heart rate monitoring and why it can be difficult. So it is helpful to know why people have stopped HRM. There are free text boxes for practically every question so you can add in a comment if you do not think the question exactly matches your circumstances, and also include information about when you stopped HRM.

ETA - I'm not affiliated to Physios for M.E., but am involved in managing the Pacing with a Heart Monitor #2 Facebook group, and we were involved in creating the questions.

 

Thanks, Daisy!

@PhysiosforME - If you want people like me, who've stopped HRM, to fill in the questionnaire then I think you'll need to edit the front end to say so. I would have given up if not for Daisy's comment, because the questions are so clearly phrased to relate to current use and the intro says that the survey is only for current users - who, by definition, haven't found it so bad that they've given up.

Edited to add: You risk having a self-selected bunch of respondents who got on great with HRM but who don't represent PwMEs' experience in general. It may even be that most patients give up.

 

Exactly @Sasha, excellent point, thank you.

 

Ooh thank you for the feedback. I'll share with Nikki. She did work with people who use HRM to develop the survey but this is a really good point

 

Ha, Sasha obviously read the preliminary information more carefully than I did, I just went ahead and filled the questionnaire in as best I could.

I used to monitor my HR and modify my activity appropriately as much as I could but have since stopped as I felt that it wasn't providing me with any actionable information, over and above what I did already. Given it's, for me, limited use and that it was an additional cognitive task taking up valuable energy, I stopped doing it.

 

But I think the question of why it doesn't suit everyone is really important, if this is an important intervention. There may be solvable problems.

 

But @Andy quotes this:

Restricting the survey to people still doing HRM seems to be against the intended aim of the survey.

 

Done.

 

Filled it out, good luck with your survey.

 

Done.

 

Done but found some of the questions around PEM duration and intensity difficult to answer, and my answers didn't really capture my reality.

To explain, there were questions about how severe your PEM was before HRM and with HRM, and how long it took to return to pre-PEM level. For me both depend strongly on how badly I overexert. A little overexertion causes 5 days or so of mildish PEM. More overexertion causes around 10 days of moderate PEM. And so on. This was the case before HRM and remains the case now so my answers - same, same - don't show any effect of HRM. Yet there is an effect and that's how often I land myself in PEM. These days it's almost always "planned PEM", a conscious decision to overexert for something important. That's because thanks to HRM I now have a better handle on which activities are particularly energy intensive so "accidental PEM" has become less frequent.

 

Thank you for these comments. I'll share with Nikki

 

I had the same difficulty, although for a slightly different reason. For me, overexerting by a lot or a little causes the same duration of PEM, it's the severity that changes.

Seeing a friend almost always causes a bit of PEM, but it's low-level – grumbling sore throat, sleep not great, a bit more pain. An unexpected event can push me so far into PEM that I can't function, but as long as I've been pacing well and am on a stable base, I'll usually still recover most of my function within a week.

Ultimately it may not matter to the survey, but it's probably still worth folk recording challenges with PEM questions on surveys (we all understand that it's fiendishly difficult to frame them!)

Thank you for your work on this.